Meenakshi Datta Ghosh assumed charge as additional secretary and project director of the National AIDS Control Organisation (NACO) in June 2002. In an interview to Jaya Shreedhar , she says it’s important to dispel the ignorance about AIDS in India:
In India, people living with HIV are often ostracised by their communities or dragged to court despite the government’s policy to “uphold (their) rights and dignity.” How do you propose to deal with such issues?
Ignorance and fear lies at the root of discrimination and stigma. It is necessary to cultivate a scientific temper and help people comprehend the medical reality of AIDS. The time has come to articulate a paradigm shift in our perception of AIDS. HIV and AIDS are simply chronic manageable conditions that need acceptance, care, support and compassion like all chronic diseases. For, if HIV and AIDS do not kill, the stigma, discrimination, exclusion and isolation will.
Several years may pass before a person living with HIV falls ill. Until then, people living with HIV can lead a relatively normal, productive life by taking good care of their health through regular medical reviews and antiretroviral therapy if necessary, and taking care not to donate blood, share needles or indulge in sex without condoms. HIV is not transmitted via skin-to-skin contact and there is no reason to isolate someone living with HIV due to fear of casual contagion. The unfortunate tendency to keep linking HIV transmission to unlawful or ‘amoral’ activities has resulted in the general population mentally distancing themselves as being beyond the reach of the virus.
Changing popular perceptions about AIDS requires massive inputs of information, education and communication, sensitisation of opinion makers and political leaders at all levels, and maybe some modification in legislation. NACO has made a beginning. These efforts need to be given more momentum.
Nearly two million children in Asia have lost one or both parents to AIDS. But India reportedly refused to furnish its count of AIDS orphans because it felt “too uncomfortable.”
This is where a second paradigm shift is necessary. We need to educate the community not to forsake the responsibility of caring for children because their parents perished in an epidemic. I strongly believe the joint family system will continue the tradition of caring for orphans in the family.
There is also need for an effective mechanism to estimate the number of AIDS orphans. However, the survival of the parents is equally important. We are, therefore, working towards a combination of institutional and home-based care initiatives to ensure the long-term survival of both mother and child. As India has about 27-28 million deliveries a year, mother-to-child HIV prevention is critical.
The long-term survival of people living with HIV is dependent on anti-retroviral therapy. But the majority of patients find patented drugs and even generics unaffordable…
Ironically, though India is among the largest producers and exporters of low-cost generic drugs, they are not affordable within the country. We need to deliberate with representatives from the pharma industry, donor agencies and health service providers. A rational policy of standard treatment regimens for HIV and AIDS needs to be adopted. Such a policy should detail modalities for expanding access to these regimens and consider social marketing and franchising to enhance the availability of HIV-related products and services. We should not fail to link HIV prevention with care and support.
Sceptics say NACO’s data on HIV/AIDS in India is neither comprehensive nor reliable.
NACO gathers data on the extent of the HIV/AIDS epidemic from its annual National Sentinel Surveillance survey and the Behavioural Sentinel survey (2001). We have also put in place a computerised management information service this year. The National Sentinel Surveillance survey (2002) will survey some 384 sites, which include sexually transmitted disease clinics, antenatal clinics, intravenous drug-user sites, and homosexual sites. I am working towards increasing the number of sites, to refine moda-lities for estimation with a view to en- hancing coverage and accuracy.
What is your assessment of NACO’s performance. How do you plan to shape its agenda?
NACO has several effective intervention programmes. The most successful ones need to be scaled up and replicated. We have evolved a comprehensive package of services for vulnerable segments and are refining strategies for HIV prevention. We are also working on providing support and care for people living with HIV and AIDS.
We intend to focus on identifying gaps in the existing strategies with regard to the geographical heterogeneity of the spread of the epidemic. We are working towards upgrading community-level HIV surveillance. We will work towards professionalising health delivery systems that deal with the logistics, management and delivery of safe blood. The specifications and standards for drugs, instruments, equipment and accessories that are utilised in the national AIDS programme need to be better arti- culated. All this can only be accomplished through multi-sectoral cooperation, community awareness and participation, initiatives from private and non-governmental sectors and explicit political will and commitment.